Back from the land of fancy rheumatologists (or, Derrie went to a teaching hospital)

Welcome to the WeHaveLupus.com forums.

You are currently viewing our boards as a guest which gives you limited access to view most discussions and access our other features. By joining our free community you will have access to post topics, communicate privately with other members (PM), respond to polls, upload content and access many other special features. Registration is fast, simple and absolutely free so please, join our community today!

If you have any problems with the registration process or your account login, please contact contact us.

If this is your first visit, be sure to
check out the FAQ by clicking the
link above. You may have to register
before you can post: click the register link above to proceed. To start viewing messages,
select the forum that you want to visit from the selection below.

Back from the land of fancy rheumatologists (or, Derrie went to a teaching hospital)

I'm back from my trip to the teaching hospital. (And back on Plaquenil as of last night, hallelujah.)

I think it was worth it, though I did not get a definitive diagnosis, which I expected. The learned rheumatologists who have seen it all said that they had "never seen anything quite like this," but that it was definitely autoimmune. They did one test called a nailfold capillaroscopy, which proved interesting because my nailfold capillaries are abnormal, which is apparently most often present in scleroderma (aka systemic sclerosis) and with secondary Raynaud's phenomenon, neither of which I have. It's also seen in SLE, Sjogren's, and dermato- and polymyositis.

So, based on the nailfold capillaries and everything else (rash, oral ulcers, leg pain, tingling in hands), they think I definitely have a systemic autoimmune disease, they just don't know what. One idea that was suggested because I have regularly-occurring (at least every couple of months) painful oral ulcers and neurological symptoms that I might have Behcet's Disease, which pretty much scared the bejeezes out of me because that disease, especially with neuro involvement, can get pretty ugly. But just as there is a chance that what I have will progress into a more serious and more defined disease, there's a chance that everything will stay where it is and never get worse.

But for now, I'm focusing on the fact that I have a plan for follow-ups and we at least have a category for my disease and very smart researchers who are following my case.

And to that one rheumatologist who six months ago said he didn't think there was anything rheumatological wrong with me: I TOLD YOU SO.

(( tl;dr version: Going to the teaching hospital was helpful, and I have an unidentified autoimmune disease for sure. ))

Glad you got through it, and are back to your meds, with a bit more knowledge. Did they mention "idiopathic" with that "systemic autoimmune disease"?... tic - They didn't mention sIBM (sporadic inclusion body myositis)? but they did polymyositis and dermatomyositis? I can't remember what-all I've been told about my "symptoms" and the neuro stuff, but there's the length of the onset thing, and the duration of the attack that are sort-hallmarks (along with the skin stuff of the derm) of the myositis thingies to differenciate between them. Did you get to do any EMGs, or EEGs? Those are always *fun*! especially if they do an EMG on your face. 'Course, the wife video'd (sic??) me with her iphone, and I gotta admit, it is kinda funny to see a person's face hopping all over the place. Did you get to do any muscle biopsies?... We'll have to keep each other updated on our neuro stuff Derrie. I've been getting that "I don't know what you've got, but it sure is interesting..." comment since about 1990... lol - with the occasional sob... |;^)

"There but for the grace of God, go I."
"... His mercy endureth for ever."

Haha, nope, not "idiopathic"-- I think the reason they mentioned poly/dermatomyositis is because of my nailfold capillary changes.

I had an EMG a little less than a year ago, which was normal. At this exam, though, I had NO ankle reflex but very brisk knee reflexes with some clonus. I have no clue what that might mean, so I'm looking forward to seeing the fancy rheumatologists' report to my doctor here and seeing whether I get bounced to my neurologist here again.

And an EMG on your face? The EMG was one of my least favorite tests, and I'm pretty sure I cried my way through half of it while the nurse tried to calm me down (I don't have family nearby to go with me to these things!). But I suppose a video of a facial EMG would be quite the spectacle.

I have not yet had a muscle biopsy, though it's been mentioned a few times, and I changed the subject. The fancy teaching-hospital rheumatologists mentioned two tests they'd suggest I consider: a nerve biopsy in my foot and a biopsy of one of the lesions I get on my tongue. The problem with both of those things is the risk of damage to the nerves, permanent numbness, etc. But then again, they said the foot nerve biopsy could be diagnostic for me, possibly? I'm wary-- NOTHING has been diagnostic for me yet, even the most invasive tests, so risking permanent nerve damage does not excite me.

We should definitely keep each other updates, jmail. I have no idea what's wrong with me, but it'll be pretty interesting if I ever find out!

I've always gotten a kick out of the EMG tests, until the last "facial" (not my first experience with that)... lol - I was always a kid that thought that sticking a 9v battery on my tongue was cool... 'Course, I'm also the one that experimented with the screwdriver in the outlet trick -WHAM!!!- onto the keester... "Now", said my dad, "show your brother so he doesn't do that."... Most of the tests I've had over the years have used needles (for intramuscular), but these last ones were done with electrodes, so the doc could move faster, I guess. With my history, it's hard to say what the nerve damage I have is from, since I've been in a couple car wrecks and fallen off of a ladder that have done damage to my back. I've also broken both my legs a few times over the years, and had multiple surgeries, so trying to figure out what's causing what is difficult, especially when you factor in that I'm getting IVIG infusions, which throws off the blood work results for most things "neuro". So, is it MG? Don't know - "inconclusive". Is it LES? Don't know - "inconclusive". etc., etc., etc., ad infinitum ad nauseum... lol - |;^) - I do blood work Monday (they've had me skip another IVIG for this one), and more neuro poking Tuesday.

"There but for the grace of God, go I."
"... His mercy endureth for ever."

Try not to "borrow trouble" and worry about what might happen. Heck, those things can happen with any of the AI diseases they just happen to those of us unlucky ones! Deal with what you have today, be thankful someone is FINALLY listening and starting you on the proper treatment!

So glad you shared this with us and know we are here for you as you travel down this path!

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

I've always gotten a kick out of the EMG tests, until the last "facial" (not my first experience with that)... lol - I was always a kid that thought that sticking a 9v battery on my tongue was cool... 'Course, I'm also the one that experimented with the screwdriver in the outlet trick -WHAM!!!- onto the keester... "Now", said my dad, "show your brother so he doesn't do that."... Most of the tests I've had over the years have used needles (for intramuscular), but these last ones were done with electrodes, so the doc could move faster, I guess. With my history, it's hard to say what the nerve damage I have is from, since I've been in a couple car wrecks and fallen off of a ladder that have done damage to my back. I've also broken both my legs a few times over the years, and had multiple surgeries, so trying to figure out what's causing what is difficult, especially when you factor in that I'm getting IVIG infusions, which throws off the blood work results for most things "neuro". So, is it MG? Don't know - "inconclusive". Is it LES? Don't know - "inconclusive". etc., etc., etc., ad infinitum ad nauseum... lol - |;^) - I do blood work Monday (they've had me skip another IVIG for this one), and more neuro poking Tuesday.

Jmail,
LOL - You remind me of my hubby. One of Mom's favorite stories was how she always knew that Jeff would be an electrical engineer. When he was still wearing diapers (with old-fashioned diaper pins), he stuck a diaper pin into an outlet and screamed. When Mom ran in and asked him what happened, Jeff promptly showed her!
Hugs,
Marla

Derrie,
I'm so glad that you went to that teaching hospital and got some new opinions.
I've had a muscle biopsy, and it wasn't too bad. They took the little bit of muscle from my upper arm. I watched the whole procedure - it was kinda neat. It left me with a one inch scar, but it's no big deal. My students thought that it was cool, and tried to convince me to tell the new freshmen that I got it breaking up a knife fight in the cafeteria. I taught in a tough school!

I'm scheduled for an EMG next week. I haven't had one since 2008, so it should be interesting to see how this one turns out.
I hope that you get some answers. At least, the docs agreed that you do have something autoimmune going on. That's a start!
Let's all keep each other informed on what we find out.
Hugs,
Marla

Well, the Fancy Academic Rheumatologist called back and said all my blood work was normal, but that she'd expected that because people with Behcet's often have completely normal blood work. Apparently because I've had ulcers on my tongue and because the ulcers went away when I was on Plaquenil and flared up big when I was off it, this swings her suspicions a bit more toward a Behcet's diagnosis possibility. She thinks I almost certainly have a vasculitis of some sort.

But, we are definitely not labeling the disease right now -- she said, "all I want to call this is a undifferentiated autoimmune disease" -- because it's better to remain "undiagnosed" and doctors will keep an open mind, instead of having a wrong diagnosis that would possibly lead to doctors not seeing the real problem and/or improper treatment.

I am not to have any more biopsies unless my symptoms get worse or I have new symptoms because the nerve biopsy they want to do to confirm Behcet's/vasculitis has a high probability of leaving me with permanent numbness. So, for now, I am staying on Plaquenil and being watched closely for any sort of progression, and that is it.

I am generally comfortable with this because I know it's the best plan for now, but it's still a little scary not knowing exactly what's wrong with me (other than there definitely IS something wrong with me) and having this potentially serious diagnosis as the leading possibility. It's also fairly depressing that there seems to be no option for curing or reversing my symptoms-- the focus of all my doctors seems to be on avoiding progression. And while I am fully on board with avoiding progression, it's a hard pill to swallow (ha!) that I may have to live with this pain and fatigue and mild neurological deficit indefinitely. I've barely entered my thirties, my body feels so much older, and everyone seems to agree that I'm not going to get better. That's not awesome.

But, so glad to get quality medical care, and so glad to have you all! And yes, Marla, we all need to keep each other posted on the progression/information about our weird autoimmune things. Knowledge really is power!

Wow, just read some on Behcet's. A lady at our church is 'suspected' of having Behcet's also. I don't think they've ever "without a doubt" diagnosed her yet. She's 50-something and has been dealing with it for over 20 years. Like other diseases of the ai ilk, it ebbs & flows, comes & goes, as and when it pleases, with her. She's been hospitalized a couple of times because of it. The "bad" thing for her with it, is she still smokes her cigarettes like there's no tomorrow...

"There but for the grace of God, go I."
"... His mercy endureth for ever."

Hi Derrie,
I'm glad that you are starting to get some answers. I had my appointment last week.
I'll have to post about it later this weekend, since my unreliable internet connection is terribly slow right now.
Hugs,
Marla